top of page

‘Forgotten’ women living with endometriosis’s ‘evil sister’ condition



Women living with adenomyosis, a condition often described by sufferers as endometriosis’s “evil twin”, have said they feel “forgotten” and are demanding better treatment for the debilitating illness.

Adenomyosis occurs when the womb lining grows into the muscular wall of the womb, causing long, heavy periods, severe period pain, bloating, and a feeling of pressure in the tummy.

Sufferers told i they often feel “forgotten” in conversations on women’s health, as the condition is far less well-known than endometriosis and there is no specific treatment pathway outlined by the National Institute for Health and Care Excellence (Nice).

Some NHS England Trusts – and Scotland’s NHS Inform website – have information about adenomyosis, but there is no webpage dedicated to the common condition on NHS Digital, including under the sections about “endometriosis” and “heavy periods”.

Like endometriosis, adenomyosis affects as many as one in 10 women, but it can take “years” to diagnose, according to the North Bristol NHS Trust.

The condition is often referred to as endometriosis’s “evil twin sister”, with the only known cure being a hysterectomy.

Tracey Kelly, from Scotland but living in Dublin, was diagnosed last month at the age of 56 despite first experiencing painful, heavy periods as a teenager.

“I never felt that I was waiting for a diagnosis because it was never mentioned that it might be anything out of the ordinary,” she said, claiming that healthcare professionals “dismissed” her pain and told her it was “normal”.

“Endometriosis was never mentioned. Adenomyosis was certainly never mentioned. So it wasn’t as if I thought there was something it might be other than, this is just me,” she added.

Adenomyosis and endometriosis Adenomyosis is a condition where the lining of the womb grows in the muscular wall of the uterus. In contrast, endometriosis is when endometrial-like tissue grows in other places, such as the ovaries or fallopian tubes. There are lots of similarities in the symptoms, including severe pelvic pain and pain during sex – especially around your period – meaning it can be difficult to diagnose from symptoms alone, said Joanne Hanley, Endometriosis UK’s specialist adviser. Some patients suffer from both conditions at once. Adenomyosis is more commonly associated with long and heavy periods, while endometriosis is more likely to impact fertility, she said. Both conditions can take years to be diagnosed and the symptoms and severity can vary between women. Adenomyosis can be investigated and diagnosed with a transvaginal ultrasound scan and/or an MRI. The only known cure for adenomyosis is a hysterectomy – meaning the removal of the womb – but other treatments to manage the pain can be tried. Ms Hanley said the condition is “oestrogen-dependent” meaning contraceptive hormones can be used to suppress oestrogen. Another treatment option is Gonadotrophin-releasing hormone (GnRH) analogue injections used to cause a “temporary medical menopause”, she said.

There are some similarities between endometriosis and adenomyosis as both conditions are caused by endometrial-like tissue growing in the wrong place, but they are classed as “two separate gynaecological conditions”, said Joanne Hanley, Endometriosis UK’s Specialist Advisor.

The advanced clinical practitioner at Northwest Pelvic Pain and Endometriosis Centre, said that unlike endometriosis, there are “no actual (Nice) guidelines for the management of adenomyosis”, meaning each patient’s treatment is “very dependent” on how much expertise the individual doctor has.

Medical negligence solicitor Jennifer Argent, who helps endometriosis patients get compensation for avoidable pain and suffering and the cost of treatment and care, said adenomyosis can be “even more difficult to diagnose than endometriosis”.

A Nice spokesperson said the condition is covered in the guidelines on “heavy menstrual bleeding”, which recommends offering a transvaginal ultrasound to women with heavy bleeding, significant pain or a “bulky, tender uterus on examination that suggests adenomyosis”.

But Ms Hanley called for a separate set of guidelines advising GPs and specialists on how to treat adenomyosis. She said: “Because it is classed as a separate condition it should ideally have its own separate pathway.”

She suggested that it could be combined with the Nice guidelines for the care and treatment of endometriosis, but said it would be “more beneficial to have separate guidelines”.

Jess, 27, from South London, has recently been undergoing investigations for adenomyosis. She first developed symptoms as a young teenager when her periods began, but said she spent years being told by doctors her pain was “normal”.

“It’s just quite disheartening and dismissive and feels a bit hopeless when you think it’s just the pain that you have to live with,” she said.

She demanded “more research and funding” into the condition to establish further treatments. She cannot opt for a hysterectomy, as she wants children, so has to rely on hormonal contraception in an attempt to control her heavy, painful periods.

“A lot of women’s health conditions are not well understood, not well treated, and dismissed by doctors because there’s an expectation that women experience pain,” she added.

Amy Marie, 34, from Essex, said she has suffered from long and heavy periods from the age of 16, but she was “pushed back” by medical professionals who did not mention adenomyosis and instead advised her to “lose weight to help alleviate the symptoms”.

“Either I didn’t bleed for months on end or it was completely the other way and I’d constantly for months on end,” she said, adding: “I was dismissed quite a lot with just heavy periods.”

She was diagnosed with polycystic ovaries about six years ago, then endometriosis a short while later following a laparoscopy – a surgical procedure used to diagnose and treat the condition.

It was not until last year that Ms Marie was finally diagnosed with adenomyosis. She was given an MRI scan amid further investigations because she and her boyfriend have been trying to conceive.

The “constant bleeding” has made conceiving difficult as it only leaves her with about five days a month where she is not bleeding. “It’s very draining. It’s very difficult because we want to try and conceive and it’s almost impossible,” she told i.

She said she feels “forgotten” as an adenomyosis sufferer, as there is a lack of awareness and support compared to other conditions like endometriosis and polycystic ovaries. Like Jess, she also does not have many treatment options as she wants children so cannot have a hysterectomy.

“I do think it’s forgotten about and because it’s not as well known, a lot of people don’t know how to support people that potentially do have it as well,” she said.

In a previous article for i, Women’s Hour presenter Emma Barnett described adenomyosis as “endo’s evil sister” and said she was finally diagnosed with the lesser-known condition aged 35 – four years after her endometriosis diagnosis.

Ms Kelly also suffered from painful periods for most of her life, leaving her unable to work or drive and forcing her to put her period dates in her diary every month so she could “work around them”.

“We’re basically trained from a very young age that that’s just the way it is,” she said. “You just have to put up with the pain. It’s just normal. That’s what you get for being a woman and you’re one of the unlucky ones who suffers.”

She was diagnosed with adenomyosis three weeks ago via an MRI scan and is now awaiting a hysterectomy to put an end to the pain, which became unbearable aged 40 when she hit perimenopause.

“The worst part is that my daughter has all the same issues I had at her age, but at least I am able to advise her,” she added.

Dr Sula Windgassen, a chartered health psychologist who specialises in women’s health, said lots of her patients have called for more “awareness and consideration around adenomyosis” because it feels like there is a “lack of treatment options and a lack of understanding”.

She said: “For people with adenomyosis, seeing all of this awareness for endometriosis can have the effect of almost feeling more isolated and underserved. Even though that doesn’t necessarily translate to differences in care.”

Both conditions face similar “ongoing problems” in healthcare, with patients being dismissed by GPs and waiting years for a diagnosis, she said.

A spokesperson from Nice said: “Heavy periods can have a major impact on wellbeing and quality of life. Adenomyosis is covered in our guideline for heavy menstrual bleeding. This provides useful and usable guidance to help healthcare professionals investigate the cause of heavy periods and the treatment options available.

“We recommend offering a transvaginal ultrasound to women with heavy menstrual bleeding who have significant period pain or a bulky, tender uterus on examination that suggests adenomyosis. Recording a detailed menstrual history is important to identify the severity and range of symptoms and to ensure that appropriate diagnostic tests and prompt and effective treatment is offered.

“Treatment can include the coil, anti-inflammatory medications and hormone therapy, [such as] the pill. If treatment is unsuccessful, healthcare professionals should consider referral to specialist care where surgical treatment is an option.

“Our guidance is developed through independent committees that include both clinical and patient members/experts. Through them we provide rigorous, independent assessment of complex evidence to produce guidance and advice for health and social care practitioners and to support the uptake of best practice.”

The Department for Health and Social Care has been contacted for comment.

0 views